When Jessica’s mother tested positive for the BRCA mutation, Jessica knew she needed to be tested, and somehow just knew she had it, too.She talks with me about her decision to have a double-mastectomy and hysterectomy just over a month after the surgery.

PROLOGUE

It’s been five weeks, today, since I had a double mastectomy with reconstruction. At the same time, I also had a full hysterectomy, so it was a double surgery. I’m still in the reconstruction process. I could have chosen to have complete reconstruction done at the time, but I chose to wait and do the two step process. So they put expanders in to hold the place until reconstruction. If you have the full reconstruction at the same time, it’s a little bit harder on the body. I just felt like since I’m doing the double mastectomy, and I’m doing the hysterectomy, I wanted to make sure the skin recovered and stayed healthy. So I wanted to just slowly prepare for that process. There are times I regret that. I would like to be totally done right now. But with each week that goes by, it gets easier mentally.

I

Tell me about why you elected to have this fairly radical but optional surgery.

My aunt had breast cancer, pre-menopausal, and then last year was diagnosed with breast cancer again, post-menopausal, and that alerted the doctors. It kind of put up a red flag that she might have the BRCA mutation, so she was tested. She was positive, and therefore my mom, her sister, was tested. She was positive, and therefore my sister and I were tested, and we were both positive. So that meant my chances of having breast, ovarian, pancreatic cancer and melanoma were much higher than the general population. We can’t do anything about the pancreas or the skin, but we’re lucky enough to have the choice to do something about breast and ovarian.

It has been more traumatic than I thought it would be. I’m glad I didn’t know that going into it, because I purposefully didn’t read too much about the surgery. My younger sister is having the surgery next week. She has read everything, and she’s very anxious.

Do you think it helps your sister that you have gone through it already?

I was just telling her the other day, I wonder if it was bad that I went first. She should’ve gone first, because she has taken this the hardest. Emotionally. She’s done all that research, which has caused some anxiety, and then she saw me go through it. It’s a difficult process, and it’s a difficult recovery. So I almost wish she had gone first so that she wouldn’t have had to have that much more anxiety. I was in a lot of pain. And part of it is that the hospital didn’t manage my pain for the first 24 hours. So it was a mess there for awhile. I think now she sees, okay, there are things she won’t be able to do, she will get sore, she will get tired. But now I’m back to my own self, so in that sense, yes, I’m glad that I got to this point before her surgery. I think she would’ve been a lot more anxious a few weeks ago.

When did you find out your mother was positive?

March. [Nine months before this interview.] It was a few weeks before my book came out. So I put it off; I didn’t think about it. I tried not to think about it; I didn’t research.

How did you find out?

I was sitting with my mother at the park when she got the phone call from her doctor. A friend of mine happened to come up right when she answered the phone, so I was talking while she was on the phone. She was very calm and quiet. I remember in the back of my head thinking that it was her doctor. I was just waiting for her to say something. We drove back home from the park and in the driveway, she said, “I’m positive.” I think she needed to wait to say it. And then she said, “I think you should get tested, too.”

What was your first thought?

I remember almost right away thinking, I’m sure I have it too, then. I don’t know why I did, but I never had a doubt that I would be positive, too. Not in a dramatic, doomsday way, I just, I don’t know. I just thought, well, if my mom has it, I just have this feeling. After they did the blood test, the genetic counselor called me on the phone, and she said, “Do you have a moment to talk?” I was very calm then, too, and I said, “I just knew. I’ve known this whole time I was going to be positive.” She said, “Most people are the opposite. They know it’s not going to be positive.” So I felt calm even then. But then it was a while later, sort of slowly, things hit me. My thoughts always seem to come much later. I have this sort of built-in reaction of, “Okay, I get it.” I know I’m very logical. Usually, not always. And then it’s like a couple hours later where, Oh, this really might mean that I have it.

Did you weigh out the option of just taking the risk of doing nothing?

I did, because my mom is 67, and she hasn’t had breast cancer. Her mother died of pancreatic cancer at 46, but my mom hasn’t had any problems. So yeah, we all had that conversation. Maybe, even though we have the mutation, maybe we just have this resilient strain of something that doesn’t get cancer. But you know, I think my kids just did it for me. I thought, I don’t want to take that risk with children that I die at 46. My aunt was 12, my uncle was 16, and my mom was 19 when their mom died. It didn’t seem like a choice for me, really.

So this is something you need, someday, to talk to your daughter about?

Yeah, my son too, because men can have the mutation. And for them, it’s prostate cancer. It’s much lower percentage, much lower risk, but yeah. So they’ll both be given the information. They don’t need to worry about that, now. But they know all about the surgery, and they know I’ve had it. I shouldn’t say they know all about it. They don’t know why, they don’t know exactly what, but they know that it was in my torso, in my chest, and I just had some parts that were unhealthy and needed to be taken out.

Do you feel like you have dealt with your decision pretty well all along?

Of the three current options, surgery to me was the clearest choice. So I feel like I’ve been pretty steady. I read enough to understand the situation, but I didn’t want to overwhelm myself and see exactly what the surgeons were going to be doing, all the complications that might arise, because I knew that that would overload me. I think I was pretty good, but there were, for sure, moments.

I was doing sit-ups two or three months before surgery and it hit me, in the way that things hit you differently sometimes, that I wouldn’t have any more children. And even though I had already known that fact, once I decided to have surgery, it just hit me differently and made me cry. I felt sadder than I had before. So there were a few moments like that, moments when it would hit me differently that I would be losing parts of my body, that I wouldn’t be able to do anything about the possibility of pancreatic cancer, and that I would always have this concern.

My husband and I had decided by not deciding that we weren’t going to have another child; we had just kept putting off the decision. We both wanted one emotionally, but we both felt maybe, realistically, with space and money and time and attention, that three might be too much. And I’d always wanted to adopt if given a chance or if it seemed like the right thing to do, so it felt like having three of our own children was a little, if we weren’t sure, then why do that? It seemed indulgent.

How has all this impacted your husband?

He is Norwegian and Minnesotan. (Laughs) So he’s been very stoic and very calm and very supportive. Very, very much: this is the way it is. Not flippant or brushing it off, but accepting, and not really taking any of the attention for himself. Plenty of people have been helping take care of him too, and we’ve all asked him how he’s doing, but you know, he’s a silent sufferer sometimes, so it’s hard to know.

II

As you approached the surgery, were there moments of, I can still back out?

Yes. In fact, it couldn’t have been more than two or three days before my surgery, when some study came out that said someone like me, my chance of having breast cancer wasn’t 87%, it was now down to 60-something. I thought, am I doing this for nothing? Is it not a big deal? My family sort of talked me down. Even if that’s right, it’s still 60-something percent.

At that point, I had gone through a lot of fear about the surgery. Not so much the mastectomy, the pain of it or the loss of body parts, I had those moments, but I went through a really fearful phase where I just had this feeling that I was not going to make it through surgery. I was scared of the surgery itself, and it was this horrible feeling like: you’re running toward a speeding train; get out of the way.

I talked to my mom about it; I talked to Alex about it, and then it started to snowball. Like now that I’m having these thoughts, does that mean my body or some intuition is trying to tell me something? My mom told me how she had to have surgery when we were little, and she said that it was the first time she ever was scared of surgery, too. She always attributed it to the fact that [by that time] she had kids. And this would be my first surgery with children. So she sort of helped calm me down about it. She didn’t tell me that I shouldn’t worry about it or that I should just go ahead with the surgery, just said, “Try to think about it a different way. It might not be the way you’re thinking about it.”

And that really actually helped, because as soon as I started picturing it being fine, it felt more fine. So I thought, Okay, well, if I can change the picture that easily then it’s not my intuition telling me that it knows something I don’t, it’s just fear and anxiety over having to go through it. And so I went into the hospital and into the surgery really kind of rarin’ to go, like: All right, there has been so much waiting for this to come, I just can’t wait to get it over with.

Did you anticipate feeling differently about yourself or feeling that you’re a different person in some way because this is a significant part of who you are as a woman and a person?

I did a little bit. Not as much as some essays or some opinions seem to feel about it. I thought, it won’t change me at all. I would mourn the loss of a part of my body, but it felt very separate from who I am. I’ve been in pain since the surgery, it’s been sore, it’s been hard to deal with, but the moments I remember as being the hardest are when I’ve had this feeling of, I now have these things in me that aren’t me. And I can feel them all the time, and I know that won’t always be the case, or so I’m told, but I can feel them all the time. It’s always sore, it’s always pressure, it feels foreign.

I had a night where I just got really anxious about it. I was talking to my husband and just talking faster and faster, and I just, I had a mini-meltdown. I started crying and I was like, I want these out of me and I can’t do anything about it!

It’s very uncomfortable. There are sharp pains sometimes, but just different sensations. Like right now it is relatively fine, and it’s just a sense. So hard to describe to someone. Well, women who have breastfed — it’s the feeling like you need to breastfeed, but you’re at a wedding and so you have to skip a few feedings, and so you’re just engorged and hard, and it’s sore, and all you want to do is breastfeed and have that relief. And so that’s on like the better side of the feeling. (Laughs) On the worst side, it can feel like burning. I haven’t fully been laying down; I’m still propped up when I sleep, but even just sitting back in a chair, especially on my left side, I don’t know why, it feels like I’ve got a metal disc pushing down on my chest and my heart.

I’ve done a little research on that just last night for the first time. I looked up a picture of an expander to see; I didn’t even know what it looked like and what was inside. So I know what I feel, and it was interesting to see it and have the sort of affirmation.

What have they told you to expect from the reconstruction?

That is the “exchange surgery,” is what they call it: Taking out the expander and putting in the permanent silocone implants. They’re supposed to be softer, and the muscles will already have sort of adjusted, so it’s supposed to be much easier. It is supposed to be a day surgery.

It will happen four weeks after I decide to stop with the fills. This is not why I did the two-step reconstruction, but you get to decide how big you want to be and when you want to stop the fills. Every week, starting when my incisions along the lower ridge of the breast are pretty healed and can handle some pressure, I go to the doctor’s office and they fill the expanders with saline, using a syringe. It’s a week-by-week process so that your skin slowly stretches back into shape, and your muscles slowly get used to having the weight again, because all the flesh is gone and they have to reconstruct the shape of a breast and fill it with something. So it’s a slower process. And I wanted that so that it would be a little bit easier on my skin. So the side benefit is that you can sort of decide when, All right, I like how I look now, let’s stop the fills.

They can also now do a nipple-saving surgery. They used to have to cut off the nipple, and then tattoo it on or different reconstructive processes, but now there’s a nipple saving procedure. Because I didn’t actually have cancer, I elected to do that. So I wanted to make sure everything stayed healthy, because they were doing the somewhat riskier nipple-saving procedure.

So you get to choose how you will look. Did you want to be your old self, or were you looking to be different?

I wanted to be my old self, but I was pretty small-chested. With the expanders in I was already bigger than I had been. After the first fill, I was like, “All right, okay, I’m good.” And the nurse and my sister were like, “Well, maybe one more. I mean, just see. Maybe you’ll want one more.” So I think I might do one more and then probably be done. Yeah, I’m not looking for anything drastically different. That would feel weird. I think if I looked drastically different, then I would feel different. And ironically — because I was probably the smallest chested of all my friends –I was the only one who never considered or wanted a boob job. I never cared, and now I’m the only one getting one. (Laughs)

I followed my doctor’s advice to do one more fill than I thought I wanted (because so many people wish they’d gone a bit bigger), and I’m happy with it. But in the first day after the last fill, I had a moment in the mirror when I looked at myself and cried. Not because I wasn’t happy with the result, but because I looked different. It was one of the few times I really didn’t feel like myself.

III

Have you found yourself emotionally dividing your attention between the hysterectomy and the mastectomy?

Not once I had the surgery because the hysterectomy was almost painless. The mastectomy was so physically draining. I remember maybe two weeks after, thinking, I had a hysterectomy. It was so secondary, even emotionally. And still is. I think I’ve dealt with not having children again. I think there’s a mild sadness about it that hasn’t changed; it hasn’t gotten better or worse.

There’s a mild sadness that I won’t ever have my period again. You know, I mean, there’s just things that you have that do make you feel that you’re a woman, and part of a chain of women that I won’t have that makes me sad. But now I’m part of a chain of another set of women who are post-menopausal, and I think my emotions now are tied into how I’m going to deal with it. I still feel like I’m in the middle of some of it, you know? Emotionally and physically, there’s still a part of my brain that feels like a big mess of, you know, wires.

I’m not quite sure what I think or how I feel yet, fully. I don’t feel like I’m far enough away from it. I’m just now starting to focus on how to handle post-menopausal symptoms, preventing osteoporosis, etc. I’m on low-dose estrogen pills but they make me a bit cranky, so I’ve got to work with my doctor to figure out another plan.

When I try to put myself in your place, I feel like there is something about the hysterectomy that — even though I may already have two kids and that’s all I want, there’s something about the finality of it —

I think that’s what it was that first hit me when I was doing those sit-ups. It’s not that we had been hoping for a third child, it was that I had no choice. It’s not my choice. It’s beyond what I can control. Some people might say, “You do have a choice. You don’t have to have surgery.” But I didn’t feel I had a choice, really. I think it was very clear to me early on that it was the better of three shitty options, so the finality, it did hit me. Yeah. You don’t get to decide this one, it’s just gonna happen, and once it happens it’s done, there’s no turning back. And I did have — now that we’re talking about it — I did have moments after surgery, even in the hospital –really brief moments compared to the feelings about the mastectomy—moments where I thought, “It’s out of me. It’s out. I can’t put it back in, can’t change my mind.”

How much of the emotional equation is knowing the bad is gone, too?

(Pause. Cries.) I’m sorry. It is, but the hard part is the idea of the “bad parts.” And it’s hard to call parts of your body “bad” when you didn’t really know. They might have always been healthy. For some reason, there’s the intellectual side of me that says, “It’s a fallopian tube. It’s flesh that makes up one small part of your whole body.” And then there’s a part of me that thinks, “What if I got rid of parts of my body for no reason? That might have always remained healthy?”

But then we’re back at: do you want to take a gamble that this is going to stay healthy? Because once it turns unhealthy, it can turn other parts of your body unhealthy and it can cause pain and suffering for you and your children and your whole family, and that’s just not worth it. So then, just like right now, talking to you, I’m already [emotionally] back. I get sad and then I just talk it out, and I just, I know there’s no choice. There’s no way I would put that risk on my children. Then it’s like, Of course.

There’s no question in your mind now that you did the right thing?

None.

EPILOGUE

You’ve elected to blog about this experience, and you’ve elected to talk to me about it. Why is that?

I never would have said no to you. There were times when I didn’t want to do it, but I never would have said no because I know how strongly I feel about stories. Probably like you, I feel strongly that stories are an important, and if not the most important thing that we have: it’s society, civilization, families. If you have a story that is worth sharing, (and I don’t think there are many that aren’t worth sharing to someone), then it’s almost a responsibility to do it, especially if you’re asked. It’s why I started my blog a few years ago, to tell different stories so that someone reading it — even though might sound so trite to say — but even if one person reading it in a corner of their room feels less alone, more normal, then that’s obviously nothing but good.